The EuRRECa Project as a Model for Data Access and Governance Policies for Rare Disease Registries That Collect Clinical Outcomes

Rare disease (RD) registries are important platforms that facilitate communication between health care professionals, patients and other members of the multidisciplinary team. RD registries enable data sharing and promotion of research and audits, often in an international setting, with the overall...

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發表在:Int J Environ Res Public Health
Main Authors: Ali, Salma R., Bryce, Jillian, Tan, Li En, Hiort, Olaf, Pereira, Alberto M., van den Akker, Erica L. T., Appelman-Dijkstra, Natasha M., Bertherat, Jerome, Cools, Martine, Dekkers, Olaf M., Kodra, Yllka, Persani, Luca, Smyth, Arelene, Smythe, Christopher, Taruscio, Domenica, Ahmed, S. Faisal
格式: Artigo
語言:Inglês
出版: MDPI 2020
主題:
Review
在線閱讀:https://ncbi.nlm.nih.gov/pmc/articles/PMC7727867/
https://ncbi.nlm.nih.gov/pubmed/33255540
https://ncbi.nlm.nih.govhttp://dx.doi.org/10.3390/ijerph17238743
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